bladder removal

[Sandy N.]

Can anyone who has had their bladder removed email me. I have so many questions. the doctor has now said he has tried everything else and right now that is an option. He wants me to get a second opinion just because it will be traumatic and life changing. How did anyone come to the decision to do it...and what has been the outcome. any help will be appreciated. Thanks Sandy N

[marinda]

I HAVENT HAD THAT DONE. BUT IT WAS BROUGHT UP BEFORE.
I WAS TOLD THAT EVEN IF YOU REMOVE THE BLADDER IT DOESNT
MEAN THAT THE PAIN IS GOING TO GO AWAY.
I WISH THAT I HAD MORE INFO FOR YOU.

[jaime15]

Sandy,
I hope everthing works out for you and you and your team of doctors can provide relief one way or another.....You'll be in my thoughts and prayers. Please keep us updated on what is happening.:kiss:

[Sandy N.]

Thank you all for responding to me...I am gathering information on it as much as I can. I know in some surgeries they leave part of your bladder and that is when pain still exists. I would have total removal where they use your intestines to create a new one. I am still trying to weigh the pros and cons. I am just tired as I know many people with IC are. My quality of life is not doing well at the moment. I even had to leave my own birthday party because of spasms. I go to another doctor next Friday for a third opinion..We will see Thanks again and I will keep you all up to date...Sandy

[julesb44]

My symptoms were pain, frequency, urgency, and at the end, retention. Having my bladder out was the best thing I could have done. All of my symptoms were gone after the surgery. The surgery is difficult, but well worth it. I have been painfree for 1 1/2 years now! Good luck to you all.
Take care, Julie:angel:

[Judith56]

Sandy, I tried to send you a message, but your mailbox is full. I will be happy to answer any questions you have, since I had my bladder out over 18 years ago. I have never regretted making the decision. If anything my life is so much better. Judith

[mwenke]

:) Hi everyone. Wow that is great that some of you have no regrets having you're bladder removed. I heard stories that the pain could still be there. Sort of like a phantom pain. But I'm glad to know that can work out. Do you urinate thru a stoma with a bag? Maybe there is hope after all.
Marcy:D

[Judith56]

Marcy, there are two main types of urostomies. An ileal conduit is where you wear an extrenal pouch over the stoma. You have no control as to when the urine comes out, and yes the urine flows out of the stoma into the appliance. There is also an internal urostomy pouch made from your bowel. You still have a stoma, but you put a catheter in the stoma several times a day to drain the urine out. There is also an internal pouch that doctors will sometimes hook up to your uretha, so you still urinate in the usual manner, though some people will need to catheterize themselves because for some they can go into permanant retention. I have had both and ileal conduit and then was converted to an internal pouch that I catheterize through a stoma. Judith

[mwenke]

It seems very daunting. But it's great that you're happy with it. It must be better than pain day in day out. Thanks for your reply.
Marcy:angel:

[Judith56]

Marcy, it so much easier to live with than dealing with IC on a daily basis. I caneat what ever I want, drink as much as I want without having to worry about needing to pee twenty times in a row. You get used to it very quickly. It makes life so much better. I never really had lots of pain, just at the end before I had the surgery. Judith

[DebbieD]

Hello! It has been a while since I have been here. But I am like Judith, I have had my bladder bemoved over 20 years ago. But I have been a one where I have had continue Problems. Everyone is Different. Just talk to you Dr and get all the Facts. Everones Sugery is Different. But before I had my Bladder removed I had a s2 NerBlock, 2 cecum-cyto-plactic Bladdwers made, which is Part Bowel and Part Bladder. I aslo have had 3 Blockages in my Ileo loop and Now I am Facing my Kidney to be removed.. But compared to what I use to go through I will take the Bag any day.:thumbsup:

Any questions Just send me a e-mail.
ldurham@comcast.net

DebbieD

[curlycue]

WOW I wish you the best of luck. There is a wealth of information and I hope some of this helps. Good Luck:hi: :butterfly

[Sandy N.]

Well my doctor has given me the final word. He will not do the surgery. I broke down in his office and he told me he is going to contact a Doctor in Atlanta who has for many many years done research on IC. My doctor will talk to him and tell him all about me(my insurance will not pay for me to go to him and he has a 6 month waiting list to see him). My doctor will see if there is any research going on at Emory or anywhere else for patients with IC especially those who have treatment resistent issues. Please pray for me. I feel like I am losing my mind.:headbang: :toilet: :mad: :confused:

[curlycue]

I will :pray: for you and I hope this Dr helps your Dr and all 3 of you find a solution to better your life.

Why wont he take your bladder out?

[Judith56]

Debbie, I hope the removal of your kidney goes smoothly and helps you live a better healthier life.
Sandy, I am so very sorry about the news you got, BUT at least he is talking to another uro about your case. That is encouraging. Hopefully he will have better news for you next time you speak with him. Judith

[mwenke]

:hi: I'm having the InterStem procedure 6-29. I have put it off twice before. Now I'm mentally ready to try it. I was in the hospital for 3 days for pain management 2 weeks ago. Since that time I have been on Duragesic 25mcg and percocet for breakthru pain. I think the patch should be stronger because I don't have much relief :( I 'm trying to hang in there as we all are. Today I'm going to get out and go for a long walk along a very pretty lake. I just took my pills so hopefuly all will be ok. Thanks all for writing. My thoughts with you all daily.
:angel: Marcy

[Judith56]

Marcy, I hope the Interstim brings about the relief you need. Sorry to hear that you needed to be admitted for pain management, but at least they have reached a point at which to keep you somewhat comfortable? Hang in there kiddo! judith

[DebbieD]

Thanks Judith and Others . I will let you know how things turn out.After awhile it does get old. But you know, You just keep going, ggoing and Going, Like the Engergizer Bunny.:)


DebbieD

[wascynda]

Hello,
I had a total cystectomy one year ago, and it was the best thing I ever did. I was on the verge of becoming a shut-in, and did not want to live like that. Today I feel wonderful. Would I do this over again? In a minute!
Cynda

[Sandy N.]

Cynda, what kind of problems were you having? and do you have the external or internal pouch? Please private message me if yu want too

[wascynda]

Hi Sandy,
I had severe IC for six years. I studied the disease, gained as much information as possible, and tried every medication I could. I traveled to IC conventions, visited doctors in several cities, did everything. Nothing helped. The pain was intolerable and I spent half of my waking (and sleeping) hours in the bathroom. When I got to the place that my quality of life was severely impaired, I decided (with more than one doctors' concurrence) that I was ready to stop living like this. I found a very compassionate, skilled doctor at a major hospital, and had surgery. I decided against an internal pouch because I had heard the horror stories about getting IC all over again. Also, I am not hung up on "body image", and so opted for a urostomy. I have not regretted this decision for one minute. The ostomy has become such a natural part of me that I don't even think about it anymore. I can now do what I want, go where I want (and stay as long as I want) -- no more pain, no more needing to be in sight of a bathroom at all times. This surgery is not for the faint of heart, and I suppose is not the answer to all people. But my experience was a very good one. If you would like any more information or details, I am more than happy to share. Best of luck to you.
Cynda

[dcoplin]

judith...maybe u can help me out..i had my bladder removed in 2000, i was pain free with the i.c. fr 30 days ..BUT!!!! the pain came back 24 hrs a day just as be4..i was warned but i was in sooo much pain i had 2 try anything..i know of a few that had the same thing happen 2 them..it puts us in a bad spot because we have horriable pain but everyone tells me i don't have i.c. any more ..so i have no dr. except @ the pain clinic..do you know why we still have the pain?..what kind of a dr. do i try 2 c fr this?..sorry so long but i know it is not in my head ..i have the bag on the out side my ureathea is also removed..any ideas will be truly helpfull...thanks fr listening..dcoplin:pray: